Notes From Off Center - Latest Comments in Bartonella or, I'm Not Crazy…Really

Re: Bartonella or, I'm Not Crazy…Really

marnie98 — Tue, 23 Feb 2010 00:29:42 -0000

Drew, I see your post is from 2008 and am just wondering if you're free from bartonella after treatment now.

I'm starting my 4th week of abx after being diagnosed with bart from an odd rash and symptoms that kept getting worse (headache, heart pounding, fatigue, enlarged lymph glands, anxiety, etc) Still I was not as sick as most.

After three weeks of abx I am gradually getting so much better. The thing that worries me is reading how many people relapse. In fact I must have had this all along and was treated with the same abx for lyme in 2007 as I'm on now. It puzzles me that after 18 months it would return, but with a rash this time.

Just wondering how you're doing now.

Thanks

Marnie

Re: Bartonella or, I'm Not Crazy…Really

cat dandruff — Thu, 04 Jun 2009 08:57:09 -0000

Hope you are feeling better these days too. This stuff is not easy to come back from no matter what people think or how good people think you look. You can always feel like you are rotting inside despite your outside appearances...

Re: Bartonella or, I'm Not Crazy…Really

Drew Tatusko — Wed, 29 Oct 2008 23:20:41 -0000

I think I am out of the woods. The levoquil rocked my system hard and it took a while for it to work its way out. Gave me arthritic symptoms for a while that were very painful. Hang in there. Its a tough haul, but you can be cured.

Re: Bartonella or, I'm Not Crazy…Really

Andrea — Wed, 29 Oct 2008 16:22:55 -0000

I have Bartonella, too. I've been trying to treat it with the Buhner protocol since I can't get to any LLMDs who treat coinfections (without a car). It's nowhere near as bad as it used to be, but I still get sleepy, pains in the back of my calves, and some random other symptoms.

Seeing as this post was from a while ago, how did the Levoquil and all work for you?

Re: Bartonella or, I'm Not Crazy…Really

Drew Tatusko — Thu, 21 Feb 2008 23:00:22 -0000

Thanks for sharing!

I am going back for a series of other panels soon. I am on Doxy and Levoquil right now. It's not that I don't have a diagnosis of bartonella, I have pictures of it!

But it is very clear from my clinical diagnoses with my disease specialist that I initially presented Lyme. However, we also know that the co-infections with Lyme are numerous and bartonella is one of them. It's almost always Lyme and x. I also have the kidney stones and a wickedly low killer cell count - both of which are symptoms of bartonella. So I do have one of the six strains for sure. Next we will get a look inside of my red blood cells to see what is going on and to test the effectiveness of the current treatment.

Thanks for reading and feel free to share any other thoughts here. I want this kind of information out in public for others like yourself to read and feel comforted that they are not alone in this and not going crazy if they feel awful and no one says there is anything wrong with with them. I felt like I was going insane, and I am probably a way above average intelligence, graduate educated person who looks at everything rationally. If I can feel like I am going nuts about this stuff, I think anyone can!

BTW, what did they prescribe for you after your diagnosis? Curious.

Re: Bartonella or, I'm Not Crazy…Really

Lindsay — Thu, 21 Feb 2008 20:15:27 -0000

hey there.. I actually am/was going through the EXACT SAME THING YOU DID.. i went to my PCP a bunch of times complaining about fatigue, occasional stomach issues, flu like symptoms, ect. EVERYTHING, but to all at once..

Finally, I found a lump in my groin. I was scared! All those symptoms and now a lump! I rushed to the doc, who sent me to get an ultrasound. It was definitely a swollen (but not enlarged) lymph node. Scary.

So i had to have it removed to they can rule out cancer, which they did.. And this was their diagnosis

There were granulomas found within the removed lymph node which suggests a infection by Bartonella, (some other disease that i dont remember right now), or other infectious disease.

i was like WHAT?! Thats it?! nothing definitive? Just.. its PROBABLY bartonella because patient "lives with cats" but it CAN be anything.

So my PCP was annoyed with that as well because you need certain anti-biotics for certain infections.. One doesn't work for all!

So she sent to me to infectious disease specialist. (it was kinda scary going in there, i was imagining what was living in little petry dishes back there) The specialist read the report and had the same reaction as i did.

Ok, so to make a long story not AS long.. She had me do a few tests. the first was a full blood panel.

The other tests you should take note because they are DEFINITIVE ANSWERS TO WHETHER OR NOT YOU HAVE BARTONELLA!

They are doing a BARTONELLA culture - theyre basically trying to grow the organism in my blood so they can tell WHICH KIND it is (there are multiiple strains)

The other is a blood test that tests for the anti-bodies that are only there when you have it. This is how they test cats for it. Only 6% of healthy people have those anti-bodies. So if they find them, then you probably have it.

So.. I know you thinky ou have Lymes disease, but i still wouldn't rule out bartonella. its possible, and they CAN test for it.

email me if you wanna chat.. i have a plethera of info on the subject

lilmsscareall100@aol.com

p.s. good luck, hope you feel better